When Pam Munro was ready, she gathered her family and friends at her bedside. There, with a tiara perched on her head, she held court in her home for an hour or two in the evenings while she still could. Together, they joked and laughed as she waited for the death she had planned.
The 62-year-old Blaine woman died July 17.
Twelve days earlier, she had stopped eating and drinking – choosing to accelerate her death instead of lingering into the later stages of her rapidly progressing Alzheimer’s.
Her father had dementia with Lewy bodies, her grandmother Alzheimer’s. She saw them deteriorate slowly until they were institutionalized. She didn’t want to end her days locked away in a care facility, a vegetable, not knowing her family and friends.
“My life really is at the end. After that, it’s not living. And there is no cure,” Pam said in an interview on her third day without food and drink, when she could still talk. “I want to die with dignity. I want to enjoy everything I can.”
Steve Munro, her husband of 15 years, looked on as she talked. Sitting near her was Bellingham resident Ashley Benem, a death midwife who helped the Munros navigate the end of Pam’s life. Benem is the founder of the nonprofit A Sacred Passing: Death Midwifery Services.
Pam already had decided to voluntarily stop eating and drinking, which is legal and also known as VSED, when the Munros met with Benem for the first time in January.
“It was pretty daunting. We didn’t know what to do, how to go about it. We needed advice,” Steve, 66, said Sept. 26. “It gave me comfort. Part of it was they knew what to do. I didn’t know what to do.”
Benem is among a growing number – exactly how many isn’t known because there is no regulatory agency – of people who help the dying and their loved ones in their walk with death. As a birth midwife ushers new life into the world, a death midwife helps ease people into death.
“They are the bookends of life. We start with an in breath and we end with an out breath,” said Henry Fersko-Weiss, author of “Caring for the Dying: the Doula Approach to a Meaningful Death,” which will be published in 2017.
Practitioners in the emerging field are known by a number of names, including death doulas, home funeral guides, transition coaches and end of life guides.
They offer a variety of services. Some are volunteers. Others, like Benem, are professionals and charge a fee.
What they share is a desire to comfort, to bring death back home into the family fold, and to once again make death a normal part of life instead of sequestering it away in hospitals and funeral homes.
Such services are a convergence of two trends: People who want to die on their own terms and the aging baby boomers, a population juggernaut of about 75.4 million, who are driving the conversation much as they pushed for – and succeeded in getting – more personal, less institutionalized childbirth in their younger days.
A guide for the dying
Benem came to midwifery after years of medical experience as an EMT and paramedic. After the birth of her son, she became a licensed massage therapist and birth doula before becoming interested in serving as a death midwife.
Benem and her team at A Sacred Passing offer a number of services, all non-medical, that are tailored to individual needs.
They provide support and help people plan for the end of life. They work with funeral homes, hospice and others to augment existing care and services, they create vigils, they sit with the dying, they help with the practical, such as documents needed for end of life care, and they address spiritual needs.
“We go where the patient goes,” Benem said.“There’s not a single nurse or LPN (licensed practical nurse) that doesn’t want to sit at the bedside of someone that’s dying. They simply can’t because of staffing.”
She said death midwives can be advocates who help the dying and their loved ones navigate the big picture, who help them consider quality of life through the entire dying process.
“Our current models of care, though excellent at handling specific aspects of the end of life journey, leave people with huge gaps to try to navigate for themselves,” Benem said. “For example, you have an excellent physician to handle your medical care, but no one to handle the social, spiritual or economic questions or concerns.”
Such services are a convergence of two trends: People who want to die on their own terms, and the aging of baby boomers, a population juggernaut of about 75.4 million, who are driving the conversation much as they pushed for – and succeeded in getting – more personal, less institutionalized childbirth in their younger days.
We’ve lost touch with the deeper sense of what this journey is about and how to go through it.
Henry Fersko-Weiss, author of “Caring for the Dying: the Doula Approach to a Meaningful Death”
No one is tracking the number of people turning to such services but anecdotal information indicates an increase, including from people who are going to training offered by Benem.
“The sheer number of people calling, emailing with questions is on a steady rise,” Benem said. “Our classes are typically full four months in advance.”
Fersko-Weiss also reported seeing more people showing up for training and classes offered through the International End of Life Doula Association, which the former hospice social worker co-founded in 2014 to establish a standard of training and to certify death doulas.
Benem, who said she traveled and took a multitude of classes, gleaning what she needed to become a death midwife, also supported creating standards for licensing, and said she wants Washington state to certify death doulas and death midwives.
New name, old ways
The desire to bring death home is a desire to return to the old ways, those in the field said.
“We’ve lost touch with the deeper sense of what this journey is about and how to go through it,” Fersko-Weiss said.
Before the Civil War, family and friends prepared their dead for burial, according to “A Family Undertaking,” a 2004 documentary about the home-funeral movement in America.
Benem said her grandmother served as a midwife, a function common in many agricultural and rural communities in North America.
“They provided all the prenatal, birth and postpartum care for women in the town, village or community. They would fetch the doctor from the local city if there was a major situation, but most was done at home with the midwives,” she said.
“These are the same women who came to sit with the dying and tend to the very ill or injured. They were the ones who washed the bodies and prepped the body and home for receiving the wake and vigil keepers,” Benem added. “This is what she did. The training was all on the job. No formal schooling. She delivered babies and the dead. The work has not changed. Just the titles. It’s a new name for an old practice.”
“I’m at peace”
Back in the Munro household in Blaine, Benem sat near a tired Pam as she talked about her struggle with Alzheimer’s.
She would brush her teeth, forget that she had and wonder why her toothbrush was wet. She left groceries in the trunk of her car for days. She put muffins into the oven, forgot about them, and couldn’t figure out why the house was full of smoke.
Her balance was worsening rapidly. She kept falling. Benem, who had been monitoring Pam, set up a 24-hour schedule so she wasn’t left unattended and to provide some relief to Steve, who was struggling to care for her.
In the final days of her life, Pam talked about the lotion and oils her family would rub on her body after she died – giving them one last chance to touch her and be with her. She showed an ocean-themed shroud she would be wrapped in, one created for her by April Lynn, a death doula who works with Benem.
“I’m at peace. The closer it gets to my journey date, the more excited I am. I’m going my way,” Pam said.
She talked about the rocks gathered at seaside and placed downstairs in her home. She wanted loved ones to write a message or a prayer on a rock and then “huck” it – she was specific about the word – into a bay. The ritual would act as a continuation of her love for beaches and beachcombing, which included having her ashes spread at sea in the San Juan Islands.
“And when you huck it, please be sure to also huck any pain or sorrow you might be ready to release as well,” Pam said in a note. “I will be there with you. I will help you. I will always love you.”